Thursday, March 19, 2009

"Congenital Heart Futures Act" Introduced to Congress

I will be the first to admit that politics, current legislation and public funding do not take up too much space in my brain these days. But when I see a "Help to Pass Congenital Heart Futures Act!‏" subject line, you can bet I clicked open that email!

For the first time in U.S. history, Congress is addressing the needs (present and future) of congenital heart kids (and adults!). The legislation's purpose is two-fold. First, it will "...increase research surrounding the cause, diagnosis, treatment, prevention, long-term outcomes and barriers to care for all CHD patients." Secondly, it seeks to "promote CHD awareness by creating a comprehensive public education and awareness campaign."

Increased research, awareness and funding for the 1.8 million people like Luke fighing congenital heart disease? Sign me up!

You can help me get this legislation passed. Please email your Senators and Congressman and ask them to become co-sponsors of this legislation. Here's how:

I am writing as a member/supporter of the The Congenital Heart Information Network to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

[Insert 2-3 sentences saying why you care – some examples:

From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.

For a parent: My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.

From a health care provider: As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thank you in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,

[name][full mailing address][email]

Make your letter personal to you. The template has a place to add two or three sentences (more is NOT better in this case!) about why this legislation matters to you personally, and offers some samples to help get you started.

Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it! Easy and potentially life-changing for so many children and families. Thank you!

About Us

Roger and Jesse welcomed Lukas Scott into our lives in January of 2007. He came into this world with only one ventricle, but with incalculable lessons to teach those who love him. This blog is intended to keep family and friends updated on Luke's journey, and in the hopes of passing on the encouragement, joy and deeper understanding of God's love we receive by knowing Luke.